Research agenda setting from the perspective of a highly diverse patient population with visual impairments or ophthalmological diseases
2014 Conference
Abstract:
Background: Patient involvement in research agenda setting has been studied in various initiatives. However, little insight is available on effective involvement strategies for both vulnerable, and for highly diverse and divided patient populations.
Objective: To develop a research agenda for people with visual impairments or ophthalmological diseases, taking into account their specific needs for optimal involvement and the heterogenic nature of the patient population.
Methods: The Dialogue Model was used, comprising the following four phases: exploration, consultation, prioritization and implementation. Eight homogenous focus groups were organized and several additional interviews were conducted during the consultation phase. During the prioritization phase, medical research topics and societal and rehabilitation research topics were ranked in two questionnaires. Several strategies were applied to optimize the involvement of visually impaired participants.
Results: To unify the diverse patient population, the topics of the research agendas were categorized under general themes (eg regenerative medicine, cause and mechanism of disease, and orientation and mobility). Some topics were formulated for specific ophthalmological diseases; however, during the consultation phase a substantive overlap in research topics was identified between the different patient groups. Additionally, by correlating the results of the data to the ophthalmological disease and severity of the impairment justice was done to the diversity of the needs of the patient groups.
Discussion: This research will provide insight in strategies to set up a shared research agenda from the perspective of a highly diverse and divided patient population.
Authors
Broerse ~ Jacqueline
Jacqueline E W Broerse is professor of Innovation and Communication in the Health and Life Sciences and head of the department science communication, Athena Institute, VU University. Her research focuses on multi-stakeholder involvement, analysis and development of methodologies to stimulate dialogue between society, policy and health and life science research.
View all articles by this authorPittens ~ Carina
Carina Pittens is a researcher at the Athena Institute, VU University Amsterdam. In her research she focuses on optimizing patient involvement in developments of guidelines in health. She is involved in a wide variety of research projects concerning patient participation, including research agenda setting.
View all articles by this authorSchölvinck ~ Anne-Floor
Anne-Floor Schölvinck is researcher at the Athena Institute of VU University Amsterdam. Her research expertise is the optimization of multi-stakeholder involvement, with specific attention to patients, in health research and care practice.
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